I have had RA [officially] since i was 21. I am now twice that age and in need of my left hip replacing. The problem is i don't have a full-time job, as such!

I work for the NHS in a hospital as a Traffic Management Officer (Parking Attendant really) and have been doing so for over 3 years(ish) as an "Agency Worker". I am part of their in-house agency known as Flexibank.

I need this operation though, and this is where my trouble comes in. Being only agency means that when i am off work recovering and getting back on my feet I will be making NO money. Also, my job wont be kept open for me, and so i wont be able to go back (even on light/desk duty). So i am scared too leave this position!

I have no idea about benefits as i have always had a job and don't know how to go about getting the right ones, or what the right ones are. I tried DLA three separate times and got turned down each time. I have been told that i need to apparently fight this, and that it could take up to a year to approve. But i get disheartened by the rejections because...well, i just do!

I don't know how to fill out forms. I don't/can't lie about my extremities because i don't know what they are!? I have lived with the pain for so long that i ignore the twangs and twinges and just get on with things. But these twangs/twinges are becoming too much to bare =( I have sciatica and scoliosis because of my hip. A loss of millimeters on my left leg (for which i wear a heel riser in my shoe to compensate) and an overwhelming feeling of uselessness.

I don't talk to my family much. My father died when i was 16, and so i have no parental-figure to look up to or ask. I find life a struggle and feel very much alone sometimes, even though i have a multitude of friends. But they don't understand how it feels to not be able to put socks on, or cut toenails, or pick a penny from the floor without pain.

I do have a wonderful Fiancee though, and as much as she's understanding of things she still doesn't know what, or how, i feel most days.

I don't know if anyone will read this. I don't know if this is too long. But i just wanted to write some of my frustrations out and hope that someone out there can understand, even partly, where i am coming from.

And if you want to know where exactly i have RA then i will tell you....ALL over! Head to toe, riddled with it.

11 Replies

Martyn, apply again for dla,get the forms and then get someone from c.a.b. to help you fill in the forms. If you get rejected again fight it. can will help with that too. I'm sorry you in so much pain,i wish i could do some thing to help you,but sadly i can't.

Do come on this site and blog,beca\use sometimes it help just to get it off your chest and there will always be somebody on here who can cheer you up. Please share the good and the bad times. We are a great bunch on here.

Take care, sylvi.x

5 years agoHidden

Hi Martyn i agree with Sylvi re DLA and also if you could get your GP/OT/Consultant to write a supporting statement or let them know that you are going to apply again so that they can support you.

3 years is a long time to be an agency worker, has there not been some recent legislation changes regarding this - there is a great Lady on here who is well versed in all things legal who hopefully she will come on and give you some advice.

I really do sympathise, it seems so unfair that you are not entitled to something whilst recovering - when you are in with the CAB ask them about that as well. ESA perhaps?

I agree with Sylvi. The C A B should be able to help you. There is a lot of help out there. I think there are booklets that guide you through filling in the DLA forms. I got one from the hospital. But when you feel rubbish, its hard to make the effort sometimes.

I took about a week to fill my form in, kept a rough copy first and kept improving it and adding things I couldn't do, as I remembered each one. And felt more and more sorry for myself as I "confessed" how useless I really am!!

And at the Jobcentres there are specialists called DEAs - Disability Employment Advisors who can help you with Employment problems.

But anyway, you have come to the right place, where you will get lots of help and support.

Good luck!

5 years agoHidden

That wasn't too long - and you were very clear about your situation:-} This site is a great place to 'talk' to other people who really know how you're feeling and what day-to-day life is like with RA.

I agree - seek immediate advice from CAB regarding your employment. I sympathise as having always been self-employed, I have no fall-back position other than savings, when I'm unable to work. I don't have the kind of savings that will last anything like a lifetime and they're already substantially depleted

Keep blogging now you've started, you'll get plenty of support on here:-}

Thank you so much for your kind words. I shall try CAB again, but find them frustrating at times, if i'm honest! And their last answer to my inquiries about what i'd be able to get regarding benefits ended at "...when you have no job, then come back and see us. There's nothing we can really do till then.". Most infuriating as i wanted to be ready if the situation arose (which it hasn't yet, thankfully).

Mads: you are right about the job scenario being too long. Unfortunately they're not very forthright in resolving this situation, and i get bounced pillar to post in trying to get answers regarding a full-time contract. I don't know where to go to get the answers i'm looking for, so i will keep bouncing.

I found this site through facebook and once i'd read a few things found that i could feel comfortable in writing things and talking to people. I know plenty of people from the hospital who all have RA but they're patients coming in for treatment/operations and so i don't get to spend great lengths of time talking to them.

5 years agoHidden

Dear Martyn.,

We are all here to help if we can, I m hoping that the lady mentioned with legal knowledge will help, I thought the law had been changed so temporary workers had more rights.. look into this with the cab x

I thought things had changed and agency workers can now get statutory sick pay, and some employment rights. After all it is 21st century not victorian england, so I'd have hoped things would have improved! Direct gov has a page on this: direct.gov.uk/en/Employment...

And there's also some suggestions of other places to ask in case CAB haven't got an appointment for you. Good luck. Polly

5 years agoHidden

Hi Martyn, I can't help at all on employment issues or legalities because a) I live in Scotland and b) have had RA for less than a year (that I've known of anyway) and c) am self employed - so all I can offer you is support as a fellow RAer and forum member. I have been self employed since leaving college in my mid 20s but as I'm an artist I earn very little and depend mostly on my OH who is a full time night care-worker currently. Some days I'm determined not to let RA get the better of me but on others it just does seem like a big, rampant weed which I'm always fighting off.

As an artist I have no pension and no union - and am currently not even looking for opportunities and commissions although I have undertaken many in my time but I lack the energy for all that travel and consultation just now. So I do at least know how vulnerable we feel when our health goes wrong and we don't have any fall back in place.

Best of luck and stay on here - it defies much of the everyday loneliness of living with RA at least. Tilda

Hi Martyn, as an Agency 'bank' worker you have rights. Try looking up "Temporary and Agency Work Directive." Also, speak to the Human Resource department for the trust. I know you are entitled to holiday pay, so if the worst come to the worse you can use your holiday to have your operation. (28 days if you work full time). Working time directive. You also have rights if you are classed as disabled. You really need to look into it, ask CAB when you ask about DLA.

Welcome. I can't add much to what everybody else has said apart from I suggest you phone NRAS helpline (their number is on their website) they have a couple if volunteers with inside out knowledge of employment rights and applying for benefits. They really know their stuff.

I am also going through the process as I was turned down. Wasn't gonna appeal, but doc said she supported me in the application when they contacted her and she advised me to appeal, so here I go again. Hopefully I will be successful this time round!

I know it's drag and realistically if we can manage, I can't be bothered, but hubby has jumped on the band waggon and says he will help.